Hello everyone! I am conducting research on how the delayed diagnosis of Celiac disease leads to the increased diagnosis of other autoimmune diseases for my Advanced Placement (AP) Research class at school. In order to conduct the necessary research on the topic and effectively write a research paper, I have created a short, simple survey with questions related to Celiac disease and other autoimmune diseases. If possible, please take 5-10 minutes to fill out this survey in order to both benefit my research and the Celiac community.

Before the survey is completed, the attached consent form must be completed as well. All participants must be at least 18 years old, and it is preferred that the participant have Celiac disease. There are no other requirements for this survey, and it is in no way required, this is just to gather data for my class. This survey will be closed after November 28 so if able, please complete it by then. Participation is voluntary but highly encouraged and extremely appreciated. 

Survey: https://forms.gle/m1g5cyfXbJoGRknFA 

I have been gluten free for about five years now and I have never been nor do I think I’m celiac. When I do digest gluten I definitely experience edema (severity usually proportionate to the amount of gluten I eat). If anyone’s experienced this before you’ll understand that assessment of severity.

So I guess I would say I’m slightly intolerant

Anyways I don’t like not being able to eat gluten and desperately want to start baking again plus make life easier as my bf love gluten-full foods 😂 I’m planning on just taking some time off of work and try to acclimate myself to it again. I could do it over a month but would like for it to be more like a week. If anyone has tried this or has any knowledge you can share that would be appreciated.

Edit: I am also speaking with my doctor about this I just want to know if anyone else has knowledge or could tell me what happen to them so I know the potential outcomes

*I recognize that any information provided is not professional medical advice nor am I asking for that on reddit :) just some help to this girl can enjoy baking again!

I’ve been having some ongoing issues when I eat gluten I get light headed been having coordination problems stuttering they have done several test nothing besides high lipase and trans glutamine levels also have coordination problems and walk balance trying aee if it’s just me or anyone else have problems like this see a stomach doctor tomorrow

About two years ago I started experiencing an intense itching sensation that would spread as I scratched. Or it would pop up in random parts of my body. I’m talking about the most intense itch imaginable.. like my skin was on fire almost! Anywhere I scratched formed red welts.

Benadryl wouldn’t even touch it even when combining topical with a tablet. After about 3 weeks of this my neurologist (I was diagnosed with MS in 2019) prescribed Hydroxyzine - I thought maybe it was related to the MS - and this is the only thing that helps. I did a little test by avoiding gluten for two weeks and then reintroducing it again and sure enough- the itching came back within maybe an hour or so after.

I can’t seem to find any solid info connecting the two online. I don’t get blisters described as Dermatitis herpetiformis. It’s more like hives almost.

I’ve also been looking into systemic mastocytosis but I just recently learned of this and I’m certainly no doctor or legitimate scientist so… 🤷‍♀️

Just curious if anyone else has a similar experience and has gotten any solid diagnosis or has any other insight. Of course I’ve just been living a gluten-free lifestyle (to the best of my ability) which feels great, but I can’t help but be curious about what is really going on with my body!

I'm writing a paper about the pathophysiology of celiac disease that's a little more digestible that pHD written papers yet still sciency-y.

Does anyone have a good understanding of the pathophysiology of celiac disease that I can talk to? I'd love to talk to someone see if they agree with what I've come up with

Hi all, it seems I'm a real curious case of a gluten sensitive and looking for answers. Some 7 years ago I did a full blown elimination diet for a few months after my thyroid shut down (even took levothyroxine for more than a year), and the clear culprit was gluten. It took me 5 years of gluten-free living to get rid of all the symptoms. Last year I got adventurous after reading sourdough could break down gluten, so I made sourdough bread with rye, and low and behold, no symptoms at all! Tried the same with barley, no symptoms as well. Then I tried it with spelt, as some gluten sensitives say they can tolerate old wheat species better. Result: I felt miserable af for a week and won't repeat this experiment ever again, lol.

I read some studies and the only difference in gliadins of wheat, barley and rye I could find was their molecular weight/density. Could this be the reason why I can tolerate rye and barley really well (even making barley risotto now, yummy), but no wheat species?

I would be deeply grateful for any ideas and inputs. Thanks!

" Dawn Powerwash contains strong solvents, chelants, and high-alkaline ingredients that help it cling and decimate dirt. It also has rubbing alcohol, which helps it remove more stains."

Will this help to break down gluten proteins in the absence of soap and hot water?

Hi all. I researched this subject a lot and can't really comprehend fully what is the real reason of gluten (and all other food related) intolerance (immunological reaction, bursting of histamine to certain proteins on cell level in a small intestine tissue (what the heck), IgE IgM response, blah blah yeah). So, why, even having all digestive organs present, fully operational and healthy, there is no ability of them to break specific protein chains correctly, at what steps that mechanism goes wrong, why it can't be reversed, unlearned (i believe that it is a learned pattern) like, using desesitization, by which plenty of allergic conditions are cured.

And to who read all this to an end - how big a probability to transfer that condition to an offspring, what lessens that chance and how to minimise it's negative effects on health and wellbeing if it is transferred.

I am a Psychology student conducting research about the relationship between the parent’s celiac disease and the effects it has on their Well-being. I would appreciate if you took some time and filled it in as it can further our understanding of the implications of the disease.

In case you had any questions, please do not hesitate to contact Me via the provided email in the questionnaire.

https://docs.google.com/forms/d/e/1FAIpQLScHAFzHsza46WbwgKb0E-Mo8nYLnMJw2pOW-Y4sV4xOcYA-0g/viewform?usp=sf_link

Thank you for your cooperation!

My daughter was recently diagnosed with celiac disease. So far, all of the discussion groups that I've found are based on anecdotes and semi-expert opinion rather than sharing peer reviewed science. Are there any Facebook groups or forums that are more active than this sub? Any recommendations of who to follow on Twitter?

Hey guys! My name is Erin, and I’m a student at California State University Long Beach. I got diagnosed with celiac disease in July of 2021. I created a short, anonymous, 13 question survey for my thesis asking about people’s experiences having been diagnosed. I would really appreciate if you guys would be willing to take it! Let me know if you have any questions. Survey Link

Hi, I was wondering if there are any professionals who are biologists/chemists/physicists on the page that would be able to help me. I would like to find the size (length and width) of the whole polymer of glutenin and gliadin. I have searched numerous articles and cannot find anything, all of them refer to the size of subunits of the monomers, which is only a tiny section of the polymer. I am starting to suspect that they are poorly understood and maybe that's why we haven't cracked the "perfect gluten-free bread".

If I can at least find the length and width of a monomer and find the number of monomers in glutenin/gliadin I could find the polymer geometry but this is also very difficult to find.

To finish if anyone can send me links to papers that might have this information that would be amazing. My institution allows me access to most of them thankfully. Thanks for helping me on the quest for finding the "perfect GF bread".

I've been looking at a bunch of official celiac sources (like the Canadian Celiac Association) and all say there is no evidence that gluten can pass through the skin to the intestines, and even if it did if would be in negligible amounts.

So for things like shampoo, conditioner, and body lotion, do you guys worry about gluten in skincare

So here's the context. I am a 20 year old male, and I was diagnosed with Celiac 1 year ago, but couldn't begin making the lifestyle change on account of me being a conscript in my country's military, as my diet was somewhat fixed in place by my rations. I was very concerned about this, so I got a second opinion from another doctor, and he concurred with the first doctor. It makes sense, given how my sister has a pretty serious version of Celiac, and as soon as she went gluten free (admittedly far younger than I) she began to grow very rapidly. I believe Celiac can explain the arrested development of my height, as I have been 171cm/5ft7 since I was 14 with no change at all. This wouldn't be odd if I had normal genetics, but my family, with the exception of my celiac-afflicted sister, are all very tall, with many of the women of my family being above 180cm. My Father is 191cm and my mother is 165cm. I understand at my age ginormous growth is ineffable, but I was wondering what could be possible. How many cm can I expect, best case scenario over an extended period of a few years of this diet? I think it's relevant to note that I have certain traits which still suggest I am not fully through puberty. For one, I still have acne (though it had receded very abruptly since going gluten-free), I haver had stretch marks on my shoulders and back for years now despite not growing in height or weight, I still have a very fast metabolism like I did when I was a child. One more indicator (I apologize if this sounds very stupid, I don't know very much about such topics) that maybe I am not through growing yet is the fact that since I switched to a gluten free diet, I have begun to lose weight very rapidly, despite not exercising at all, and still eating a fair amount of junk food, soft drinks and a LOT of meat (maybe about 2 full meals worth of sausages, porkchops or bacon a day, a large plate of fries, a medium bag of chips, about a 500 ml or so of soft drinks, 1-2 candy bars, a few pieces of halloumi cheese and 2-3 eggs too. In 2.5 weeks of having gone gluten free, despite still eating a fuck-ton of gluten-free food , with very little physical activity beyond walking around all the time, I have lost 4 kilos/ 8.8 pounds. This makes me wonder if my body is rapidly burning the calories I'm taking in to facilitate growth, now that the gluten is no longer inhibiting it. Thank you for taking the time to answer my question, I very much appreciate it. I honestly feel very worried that I have got this disease far too late into my development to minimize it's damage.

Hey Everyone! I’m Lara, a university research intern from Kultura Diagnostics. We are conducting a cross-sectional study about your experiences as individuals who follow a gluten free diet. I would really appreciate it if you would take the time (just a few mins) to answer the survey linked below! Form Here

We, at Kultura Diagnostics, aim to develop a platform to help to better address your needs. Feel free to shoot me a message if you have any questions or my supervisor Sarrah Lal at sarrah.lal@kulturadiagnostics.com or text/WhatsApp her at 289-808-8597.

Our mission to to make #FoodTests accessible and reliable. We have already developed the #BSureGluten #Biosensor that detects #Gluten in foods in one minutes. The technology we used was validated by the u/USDA_ARS. Stay tine for solutions to #EatInPeace. #Celiac #Coeliac #Glutenfree #Gliadin

https://www.sciencedirect.com/science/article/pii/S0308814621005203

https://preview.redd.it/lzyznugtw2e81.jpg?width=3024&format=pjpg&auto=webp&s=1a1bb659ee433fd7e0ce2da4648d50fe6e5c5c1a

Just wanted to share this article:

https://pubmed.ncbi.nlm.nih.gov/33774225/

As a food safety expert and science nerd, this is the kind of reads I like. Plus, my company has licensed that tech! Stay tune for solutions to #EatInPeace! Follow us at:

https://twitter.com/BSureTech

https://www.facebook.com/bsure.technologies

https://www.linkedin.com/company/bsuretech

I was wondering how long will we have to live like this until a cure is found?

Is there a research that could make us eat gluten again or something.

Hey r/glutenscience!

I'm a student at University of Pennsylvania and I'm working on a project trying to understand the unmet needs of Celiac patients. Specifically, my team and I are looking to understand the struggles that adolescent celiac patients go through, whether it be initial diagnosis, management, food labeling, daily life, social, etc. as they seem to be slightly different than adults.

I personally don't have a ton of knowledge on the condition and have only recently started learning more, so I would love to hear your stories and try to get a better grasp about what defines the condition for adolescents today. What can you tell me about being an adolescent and having celiac disease? If you are interested in sharing, I have attached an interview screener. Thank you again!

https://docs.google.com/forms/d/e/1FAIpQLSfxmN6x6NhP406PUkYeu9_QNH-D61ni8RCfOWgaQY8HADfByw/viewform?usp=sf_link

I had to quit working at EnteroLab in Dallas Texas once I found out what Dr. Kenneth Fine was doing with the results I handed him. I confronted him about why 95% of our patients came back positive for gluten sensitivity and he got mad and brushed off the question. I later come to find out he tweaks the results to have more people test positive. He then calls them and offers a "discounted add on" test for Milk, Egg, and Soy sensitivity. ENTEROLAB IS AWFUL!! So many COLA violations, starting with the fact that the lead tech, initials are JS, doesn't even have a degree (just a GED) and he handles everyone's samples. According to the website, Dr. Fine is the medical director of the lab, when in reality he's away in New Mexico most of the time and unqualified individuals run outdated equipment to analyze your samples. Dr. Fine does not even know how to power his DSX Elisa machine. DO NOT GIVE YOUR MONEY TO THIS MAN"

Update on EnteroLab: we ran out of process buffer weeks ago which is necessary to process stool samples to run them on the Elisa DSX machine. His replacement: DI water. That's right, your stool samples are being mixed with water and run on a machine and the results are so low (in the 0.1 to 1.3 range) that he bumps them up to values of 10+ in order to call people back and tell them they were positive for a food sensitivity. If you check the Enterolab website, he states that anything above 10 is considered a positive result, but he increases the numbers to get more business. And business is suffering, over the last 2 years he's lost 10+ employees and does everything he can to cut costs including not buying materials necessary to keep the lab going